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ms_issippi

Member Since 01 Aug 2013
Offline Last Active Sep 26 2013 05:52 PM
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Topics I've Started

Neurologist Vs Gastroenterologist

24 August 2013 - 09:24 AM

I was diagnosed with celiac disease via biopsy last October. I began a gluten-free diet immediately, but did not notice significant changes in how I felt overall. This past April, after two episodes of sharp, intermittent pain on one side of my head, I was diagnosed with trigeminal neuralgia. No obvious physical causes were found - no tumor or MS on the MRI -  so I began taking anti-seizure medication to treat it. Three prescriptions later, we haven't been able to find a drug that works consistently without unacceptable side effects, so my next stop is a consultation with a neurosurgeon. 

 

Before brain surgery, though, I thought I should go back to my GI and make sure I had the celiac issues under control. They ran a whole mess of bloodwork, for celiac and other autoimmune issues (haven't gotten results back yet), but when I mentioned the connection between trigeminal neuralgia and celiac, the GI said he wasn't aware of/hadn't seen any evidence that those two things could be related. This seems to be in conflict with the information I've seen about celiac neuropathy, but I wondered if I was making an incorrect jump from that to TN. 

 

In short, neither my neurologist nor my GI seems to feel that there's a connection between my gut and my head, but I tend to disagree. Who's right, and if it's me, how do I make my case?


Needing Some Clarity

01 August 2013 - 06:06 PM

Hello, all. I'm very new but wanted to jump in with a question that's a little time-sensitive.

 

My 6-year-old son has been officially diagnosed with "short stature" since he was three years old. Basically, he was of average height and weight until he was about 18 months old and then just stopped growing. I took him to an endocrinologist in 2011 and all of his bloodwork came back normal, including a celiac panel. He's been going back for follow-up appointments since then, and because he was hitting the minimal-required-growth rate of 2.5" a year and clinging to his spot on the percentile chart (2.5th), his doctor was content. And really, so was I, despite the fact that his father and I are of average size (5'11" and 5'5").  

 

Then last October, after more than 20 years of thinking I just had a nervous stomach, I was biopsy-diagnosed with celiac disease. With this information, I'm looking at my son's lack of growth in a new light, and at his annual endocrinologist follow-up, I mentioned this change. They ran the celiac panel and other tests, and the doctor feels everything came back normal, but I'm not as convinced. HIs vitamin was just below normal, which seems odd for a kid who drinks milk all day and has been outside all summer. He was also just below the low end of normal prealbumin. His thyroid function was iffy as well (edge of normal; she wants to retest in 4 months). 

 

So my simplest question is: now what do I do? I'm sure the most logical answer is to put him on a gluten-free diet, but there are a couple complicating factors:

1) His father and I share custody, so his dad would have to be totally on-board and able to maintain the requirements.

2) I live in a house with 8 other people (2 other adults and 5 other kids), so it would be really hard to keep him away from "bad" food.

 

In light of these, I feel like I really need to know FOR SURE if he has celiac, even though I know not everyone even gets that answer. Is there any intermediate step between here and endoscopy, other than a gluten-free diet?